Dance with me

Tag: Disability

Historically I’ve not often reblogged posts by other writers — in fact it’s probably only about 3 times in all the years. And that’s because I wanted the focus of this blog to be me. But now, with the “rebranding” and relaunch as My Autistic Dance I feel I want to expand what I publish here to include links to other posts that are insightful and illuminating, and principally about autism, such as this one by my dear friend Sonia.

The context for my poem Perfect storm is the research for my Arts Council Funded project – The Museum for Object Research. It isn’t about any one person or conversation, but more about my growing understanding of the ways in which I am disabled – despite being a competent human – by ingrained assumption and the double empathy bind.

Imagine you couldn’t speak, couldn’t sign to communicate with other people. How could you let them know when you were feeling discomfort or pain? Whether you wanted to go some place, or simply be left alone where you are?

How would you feel when doctors decided you were not competent to make your own decisions about your life? When they took you away from the places and people you were used to? When they denied you access to the tools you use to communicate?

How would you like to be medicated against your will when your distress is interpreted as non-compliance and “bad behavior”? To be punished–hurt and abused–when you are simply acting in a way that is natural for you? To be incarcerated, institutionalized and denied your freedom because somebody believes that not speaking means not thinking?

This has happened to many, many people who are autistic or have other neurological conditions affecting their ability to communicate in conventional ways. It is still happening today. Places like the Judge Rotenberg Center in Massachusetts inflict pain and fear in an attempt to force compliant behavior; instead they cause long-term harm including PTSD.

Sharisa Kochmeister was denied the right of access to her communication devices, deemed not competent and made a ward of Jefferson County, Colorado. She has been removed from her home and family, and they have been prevented from contacting each other except for a very few highly-constrained supervised visits.

What will it take for all of us to live secure in the knowledge that we will not face such arbitrary denial of our rights? That we will not be detained against our will? That we will be presumed competent regardless of our means of communication?

Dole scrounger. Benefits cheat. These are familiar epithets, catchy soundbites that stick in the memory. Beloved memes of modern day society, and a symptom of the loss of compassion for others. I’m very sorry to tell you that following a long illness compassion has died.

Here in the UK there is still pride when people recall times such as the Blitz. The popular image of people coming together, helping each other. Children evacuated from areas most at risk of bombing being taken in by strangers, being welcomed and cared for. It wasn’t true in all cases, but that’s the image people have when they think about it. That was compassion.

On to the 80’s: I grew up in the North of England during the miners’ strike, near Wigan. I can remember the familiar sight of the towers of winding engines at the pit heads, now long gone with nothing to mark where they once stood. Wigan wasn’t nearly as badly affected as other towns, having other industries besides mining. But for some communities the coal mines were the only significant source of employment. As the strike went on month after month those communities were reduced to poverty: the fight to preserve their way of life ultimately hastening their end. And yet up until the desperate end there was a camaraderie among the strikers, a willingness to share what little they had, compassion for each other.

Still in the 80’s, that was when I first encountered the term “dole scrounger” applied by the lower echelons of the press to those caught up in the mass unemployment that characterised the Thatcher years. It was the era of the yuppie and the movie Wall Street, when capitalism and self-interest became the new gods and a belief took hold that anybody who didn’t profit did so because of moral failings. Those unable to work, or unable to find work at a time with millions unemployed were portrayed as burdens on society, leaching money from those who were more fortunate.

Selfishness as a virtue dealt a killing blow to compassion, although it would linger on for decades. The final nail in its coffin has been austerity, a set of policies introduced following the global financial crisis. Deflecting blame from those whose greed triggered the collapse, the focus has been on those who are deemed a drain on society’s resources. Those who find themselves at the bottom of the heap, looked down upon and neglected by those higher up on the social scale.

The “dole scrounger” of the 80’s has been replaced by the “benefits cheat” of today: the semi-mythical fraudster who lies and cheats their way to a comfortable life by exploiting the welfare system. The small number of actual examples doesn’t prevent the media from painting a picture of an endemic problem sucking billions from the welfare pot. They cast doubt on the legitimacy of all who claim benefits, building a case on the flimsiest of foundations for tightening the rules, chasing the chimera of a perfect, foolproof system that would prevent 100% of false claims.

It’s all misdirection. Stoke people’s fears that somebody somewhere is getting away with it, and keep their attention away from the fact that so many who are in genuine need are denied assistance. That fear has replaced compassion. Instead of caring and ensuring that nobody goes without sufficient means to live, we are constantly being told that the most important thing is that not a single person gets more than their entitlement.

Increasingly restrictive rules deny the provision of basic services and a subsistence income to those who are most in need. People are dying. But then that saves money too. Is the thought of a handful of families paying for luxuries with benefits money obtained through deception so terrible that it justifies a man starving to death because his benefits were withdrawn? Because that’s the society we live in today. And that’s why I say compassion is dead.

There’s a toxic belief permeating all levels of society: that disabled lives are worth less than able ones. In just the last couple of days there has been a political candidate calling for compulsory abortion of fetuses that test positive for genetic conditions such as cerebral palsy, and a columnist in a national (UK) daily newspaper using the phrase “remedial-level dipshit” to describe children with developmental delays.

I have a daughter. I understand having hopes and dreams of what your child may achieve: that’s only natural. What isn’t natural, or at all healthy, is this cultural obsession with perfection. TV, magazines, newspapers are all full of examples of what is deemed to be “perfect” with public shaming and criticism of those don’t live up to this ideal.

Those with physical or mental disabilities are not spared. Portrayed as objects of pity, a modern-day freak show exhibited so that the able-bodied and those without cognitive differences can feel better about themselves, feel thankful that they are “normal”. And don’t get me started on the patronizing “inspirational” bullshit when a disabled person manages to achieve something that the able take for granted.

There is a high level of disability awareness, for all the good it does. A lot of able people feel uncomfortable around the disabled. It would be nice to think that it stemmed from a sense of guilt over that way they treat us, the way they think about us as lesser people, but I don’t believe that’s the case. I believe it’s because seeing us reminds them that we exist in their “perfect” world, They don’t want to be aware of us; they wish we would just disappear and stop disturbing their comfortable illusions.

The majority of language used in depictions of disability is negative: it’s all about deficits, what we can’t do, how we can’t hope to match the standards set for the able. We don’t need to be told: we’re perfectly aware of the areas where we face limitations and restrictions. The thing is, many of these restrictions in areas such as mobility and communication can be overcome to varying degrees by accommodations.

Yes, it costs a bit more to accommodate people who are outside the statistical normal range of ability. But by failing to provide that assistance the message being sent is that we are not worth it. We don’t matter. We’re not even considered a lot of the time, and when we are it’s grudging.

So it’s no wonder, when we face the constant implication that we’re a burden, a tragedy, that so many expectant parents have a fear that their child will be disabled. It’s their worst nightmare: their expectations dashed, their plans in ruin. They’ve been told time and time again about all the problems faced by families in that situation. The fear is overwhelming and colors their feelings towards the child. It fosters resentment — this disabled child took away their dreams of happily-ever-after.

No. The child isn’t the problem, it is their belief in the lies told by the media and self-interested organizations that led them to think that a “perfect” child would automatically bring happiness. The truth is that happiness comes from love and acceptance, from strong bonds and mutual respect. Society has a sick, twisted, poisonous view of what success looks like, and a long record of destroying those who drink the kool-aid and fall short of the unreachable goals.

Acceptance is the only way to go. Acceptance of people as they are, not how you might want them to be. Acceptance of difference. And just as important, acceptance of self: discarding all the baggage of internalized hatred, shame and guilt. All children have potential, all children take effort to raise, all children are different. Instead of judging them, dismissing them as failures if they don’t meet some arbitrary criteria, help and support them to explore and learn what they can do.

Warning: This post contains frank references to sex and sexual organs. If you don’t want to encounter such words then I suggest you don’t read on.

It makes me angry when I hear people make disparaging comments about somebody based on their appearance or mannerisms. The unspoken assumption that those people are somehow inferior because they do not fit into a neat little box in a neat little life.

There’s denial of a person’s self: “You can’t be disabled. You don’t look disabled.” Deliberately using the pronouns of their previous gender to refer to a trans person. Suggesting that a woman is only lesbian because she’s not had sex with a “real” man (whatever that means).

There’s the imposition of one’s own standards on another: of a sexually-provocative woman, “She looks like a tart. She’s all over those men, whoring herself.”

Guess what? There are a host of disabilities that don’t affect a person’s physical appearance: that man with Tourette’s didn’t get issued with a badge along with his diagnosis. And somebody who does have a physical sign of disability? Odds are they are aware of this themselves and don’t actually need your help in pointing it out.

A trans person who transitions knows who they are. Your crass attempts to suggest that you know better than they do only serve to paint you as ignorant, narrow-minded and prejudiced. Yes, I used to present as a man: I know this only too well, after all I was there. But I’m a woman. I don’t need or want to be reminded of who I appeared to be before. That life is in the past.

Some people are attracted to people of the same sex. For a man to suggest that a lesbian should prefer sex with a man, and that experiencing it would change her sexual orientation, demonstrates a staggering lack of understanding. If he thinks being penetrated by a penis is so wonderful perhaps he should try it. After all, speaking from personal experience would carry more weight!

And that woman wearing revealing clothes? Well, I guess she’s feeling confident and attractive. Getting attention from the opposite sex probably makes her feel empowered and can be a turn on. And maybe — shock, horror! — she enjoys sex?

There are a whole lot of people in this world of ours, and that means there’s a lot of scope for differences. Instead of feeling insecure or threatened by this I would hope that people can approach others with an open mind. We are all people and we are all different. Different does not mean less. It does not mean wrong. It’s time to accept and celebrate these differences as what make people unique and special, each in their own way.

My goal with this blog is to offend everyone in the world at least once with my words… so no one has a reason to have a heightened sense of themselves. We are all ignorant, we are all found wanting, we are all bad people sometimes.